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kenlevy
Multiple Myeloma Discussion • April 24
Patient Advocate Foundation (PAF)
Did you know that with TotalAssist, patients can use their grants for medication copays, coinsurance, and deductibles; health insurance premiums; office visit charges; and treatment-related administration charges? TotalAssist’s comprehensive approach reflects how patients actually experience care—and helps remove the financial barriers that often prevent or interrupt treatment. Join in at 1:00pm ET on Tuesday, May 12, to learn more about how TotalAssist can support you, your loved ones, or your patients during our free webinar, Empowering patients through financial help: Introducing TotalAssist.
Bactrim is given as a prophylactic antibiotic to prevent serious lung infections. Please share your experience with this drug, concerning its side effects and the fact that it can do much damage to the gut biome. I understand there are alternative antibiotics offered in difficult cases, and I'd appreciate it if anyone can share their experiences if they've tried those alternatives. I've been taking Acyclovir, an antiviral is also given as a prophylactic, for years without problems. But I'm concerned about the side effects of Bactrim. How have patients here been able to maintain their Bactrim therapy? I've read that alternatives to Bactrim could be Pentamidine, Atovaquone or Dapsone. Pentamidine is given by nasal spray and both it and Atovaquone do not appear to be too damaging to the gut biome. Has anyone here tried these alternatives? Any comments would be appreciated.
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XimenaG • Admin
Chronic Lymphocytic Leukemia Discussion • April 23
Share Your Experience in a CLL Research Survey
Every experience with CLL or SLL can make a difference 💛 HealthTree is partnering with Dr. Deborah Stephens from the University of North Carolina to better understand how different treatment approaches impact patients’ quality of life. This short survey explores real patient experiences with options like watch and wait, fixed duration therapy, continuous therapy, and chemotherapy. 🕒 Takes 15 to 20 minutes 💬 Share your experience 🔬 Help improve care for others 👉 Take the survey here: https://healthtree.org/cll/curehub/private/research/P5RRAR98W3AivMM7H3On
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ChioOsuna
Multiple Myeloma Discussion • April 23
Join us in our next event! Comment this post to send you the link.
✨ Discover the latest innovative clinical trials in multiple myeloma currently underway at Winship Cancer Institute of Emory University—and what they could mean for the future of treatment. 💬 Plus, stick around for a LIVE Q&A where you can ask your questions and hear directly from an expert in the field! 🌟 Don’t miss this chance to learn, connect, and stay empowered in your myeloma journey.
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Espitia
Multiple Myeloma Discussion • April 23
ASCT (Autologous Stem Cell Transplant)
What is the success rate, does it really add years to your life, and is it worth having this procedure. My Oncologist wants me to have this done in a few months.
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ChioOsuna
Multiple Myeloma Discussion • April 22
Join us in our next event! Comment to send you the link.
💬 Join our Non-Secretory & Oligosecretory Multiple Myeloma Community Gather 🤝 This special gathering is designed to bring together individuals living with non-secretory or oligosecretory multiple myeloma in a safe, understanding space. ✨ Connect on a personal level, share your experiences, and learn from others who truly understand what day-to-day life with this diagnosis can look like. 🌱 Whether you are newly diagnosed or have been living with this condition for some time, you are welcome here. ⚠️ Please note: This meeting is exclusively for individuals with non-secretory or oligosecretory multiple myeloma. If you’re unsure whether this group is the right fit for you, feel free to reach out at 📧 cynthia@healthtree.org 💜 We hope you’ll join us for this meaningful conversation!
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Donna
Multiple Myeloma Discussion • April 21
Supplements
I was just wondering if everyone that has high risk myeloma is taking supplements as well as their treatment. I have read about people taking them and it seems they are the people that are having the longest remissions. Anyone not taking any and still having a long remission with high risk Myeloma ?
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jromines
Myelodysplastic Syndromes Discussion • April 21
Experiencing Palpitations and Low Platelets
Hello, I am 48 years old Female and healthy. I had palpitations back in Sept and had BW done and my platelet was low and neutrophils were low as well. I had BW repeated every month until I finally saw a hematology on Feb 11, 2026 and Feb 19 I had my bone marrow biopsy. Results came back March 4 and I was classified in very high risk MDS due to complex karyotype and 2 TP53 at 34%. I have no idea what caused this and my doctor just said it was just how my cells divide. 😬 My counts stayed stable and so there was a debate if I should start on chemo or not. Since I am high risk I opt in to start with 3 day oral inqovi. BW were done weekly post treatment and my counts dropped significantly. I didn’t need transfusion as per parameters. My counts started climbing up a bit last week and just had another BW today and waiting on results. The ultimate plan is to have allogenic stem cell transplant. My two siblings have been tested and waiting on results. So far I feel fine just a bit short of breath when I climbed a really steep stairs like 50steps. I have been walking daily and doing some light weight exercise. Fasting intermittently and eating healthy. Any other advise you guys can provide while I wait for my transplant?
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XimenaG • Admin
Chronic Lymphocytic Leukemia Discussion • April 21
An Inspiring AML Story of Strength and Resilience
AI-generated title
“I found out I had leukemia in the waiting room.” For Melissa, everything changed in an instant. This AML Awareness Day, we honor the strength it takes to face the unknown, the support of loved ones, and the resilience behind every patient story. 💛 “Don’t be afraid to ask for help. Give yourself grace.” You are not alone. Watch full story: https://youtu.be/gM9LUQylsoE #AMLAwareness #LeukemiaAwareness #BloodCancer #HealthTree
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XimenaG • Admin
Acute Myeloid Leukemia Discussion • April 21
AML Awareness Day TODAY
Sometimes it begins without warning. A routine appointment. A test result. A moment that changes everything. An AML diagnosis can feel overwhelming, filled with uncertainty, difficult decisions, and questions about what comes next. This is why awareness matters. Because when patients and caregivers have access to clear information, the right resources, and a supportive community, they don’t have to face it alone. This AML Awareness Day, we honor every person navigating this experience and the strength it takes to move forward. 💛 Learn more about AML and resources that can support you: https://healthtree.org/aml/community/articles/26-aml-awareness-day?utm_source=&utm_medium=meta&utm_campaign=socialmediaorganic&utm_content=general